by Vaidhehi Veena Sanmugananthan

Imagine having pain for years of your life, but being told that there was nothing wrong with you. How would you feel if it took you years before you were finally diagnosed with an underlying condition that you’ve never heard of or know little about? Even after being diagnosed, you felt pressure and discomfort talking about your experience of pain to the people around you because of the fear of being perceived poorly. Unfortunately, this is the reality of many people diagnosed with endometriosis. 

What is endometriosis? Endometriosis is a condition that can affect anyone with a uterus.¹ The endometrium, which is the lining of the uterus, is made up of endometrial tissue. During each menstrual cycle, a new endometrium is grown in preparation for a fertilized egg. Endometriosis occurs when this tissue implants outside of the uterus, which can eventually lead to scar tissue formation and inflammation in the pelvic region and other parts of the body.² This can cause severe pain in the pelvic region, particularly during menstruation, sexual intercourse and/or when using the washroom. As well, people with endometriosis can have difficulty getting pregnant.³ According to the World Health Organization (WHO), endometriosis affects approximately 10% of individuals with a uterus that reach reproductive age.³ This condition can start at the first point of menstruation and continue into menopause.⁴

How are individuals typically diagnosed with endometriosis? In episode #117 of Raw Talk Podcast, Dr. Jaime Kroft, an obstetrician-gynaecologist at Sunnybrook Health Sciences Center and an Assistant Professor at the University of Toronto, stated “…the traditional way of diagnosing endometriosis was always surgically and where a surgeon had to perform what’s called a laparoscopy”. During a laparoscopy, a small incision is made close to a patient’s belly button and the abdomen is filled with gas for a better view of the internal organs.⁵ A laparoscope (a thin tube with a video camera) is inserted in order to look for scarring that may exist in the uterus, ovaries, fallopian tubes, bladder, and/or other organs.⁵

Amanda Weston, a Research Administrator at the University Health Network and guest on episode #117, shared her diagnosis journey of endometriosis with us. “I didn’t receive that diagnosis until after I’d had the surgery to remove the fibroid. It obviously affects everyone differently. But at the same time, it was also kind of validating to hear. I’ve had some friends who have taken years to get a diagnosis of endometriosis. So at the same time, I also felt kind of lucky that I was able to get this surgery, they found it because I’m pretty sure that’s the only way you can actually determine that you have it is to get a biopsy or some form of invasive procedure to get the tissue and see that it is endometriosis”. Amanda’s and every other patient’s journey to diagnosis is variable and can be inconsistent. To receive a diagnosis can take years of long struggle for many individuals. As Amanda highlighted, a diagnosis alone can have a validating and lasting impact. 

According to Dr. Kroft, in Europe and Canada there has been an increase in diagnosing endometriosis in clinics rather than through surgery, to expedite the process of diagnosis and to avoid having to operate on every person that shows symptoms of the condition. Despite these changes, there are still notable challenges in diagnosing patients in a timely manner. One study sought to conduct one of the first comprehensive cross-sectional surveys to determine the prevalence and symptomatic burden of endometriosis among the general population of women in Canada.⁶ In total, 30,000 Canadian women responded to the survey from December 2018 to January 2019. In this survey, they reported an average diagnostic delay of 5 years from the time of symptom onset.⁶ They also mention that other studies found diagnostic delays of 6.8 years^6,7 and 10 years.^6,8

The diagnosis delay is thought to be a result of different factors and is only one part of the bigger story of the struggle of endometriosis. Many patients report that they are often dismissed by their practitioners when they first address their symptoms. Amanda shared with us that she often felt “brushed off” by a lot of practitioners with her symptoms of pain during sexual intercourse. “It was like, oh, well, you know, you’re not dying…so there’s nothing we can really do beyond that”. “The sort of lack of support for me…that issue was glaring”. 

One factor that may lead to this dismissiveness and delay in diagnosis is the lack of normalization of menstrual pain.^9,10 There may be stigma surrounding people speaking up about menstrual pain that puts these individuals in violation of menstrual etiquette.^9,10 According to Dr. Kroft, “a lot of patients are brought up in an environment where friends or family tell them that that’s just normal, and it’s minimized. And so they don’t recognize that it’s an issue because of the societal impact surrounding acceptance of painful periods.” Many people are unaware of what is considered “normal” and “abnormal” menstrual pain.^9,10 As well, there are different types of menstrual pains that exist. Primary dysmenorrhea is menstrual pain that people normally experience when having their period. Secondary dysmenorrhea is menstrual pain that is caused by another underlying problem, such as endometriosis. This type of pain can be severe and can impact quality of life.¹¹ Identifying the difference between these two types of menstrual pain could help people identify that their painful experiences may have an underlying cause, such as endometriosis. As such, further education in understanding these aspects of menstrual pain could assist with the diagnosis of this condition.   

What efforts are being made to help expand the general knowledge of menstrual health and pain? Menstrual health education and literacy are key to help people understand what is and isn’t normal when experiencing menstrual pain. There has been a push towards improving menstrual education in youth. For example, The Centre for Pelvic Pain & Endometriosis at BC Women’s Hospital + Health Centre conducted Canada’s first high school-based endometriosis lessons, as part of a research study to improve menstrual and endometriosis education in youth.¹² Opening up the conversation surrounding “period talk” could lead people to feel more comfortable speaking about their menstrual pain earlier in life and subsequently aid in early identification of abnormal pain. Additionally, there are many research networks and non-profit organization that are working towards improving endometriosis awareness and public education (e.g., The Endo Organization of Canada, The Endometriosis Foundation of America, The Endometriosis Network of Canada, EndoMarch). All of these initiatives play a vital role in bringing endometriosis to the forefront of public and healthcare awareness, and hopefully improve significant delays in diagnosis.

There are clearly gaps surrounding the care and understanding of menstrual pain and endometriosis from a patient, healthcare, and societal perspective. In this episode, both Amanda and Dr. Kroft highlighted the importance of speaking out about pain, advocating for yourself, and seeking community with others who have similar experiences. There needs to be a push towards normalizing the discussion about menstrual pain and increasing efforts to promote menstrual health literacy and education in various communities. 

To learn more about this topic, please check out episode #117 of RawTalk Podcast: Endometriosis: Common Disease, Uncommon Diagnosis. 

We would like to acknowledge the efforts and ideas of the rest of the episode #117 team: This episode was hosted by Madi, and Hannah. Noor, Hannah, Madi, and Mayowa conducted the interviews. Atefeh, Veena, and Raina developed content. Raina and Tima were our audio engineers, Anam helped with promotions, and Noor and Atefeh were our executive producers